Levi's Legacy

Levi's Legacy Levi's Legacy is a 501(c)3 organization founded by a heart family after losing their son on 08/02/21. Most of all they feel alone.
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When families first hear the news that their baby has a congenital heart defect, their world shatters. The world stops spinning and they are overwhelmed trying to process all the information they just received. We are here to herd around these families, supporting them individually and as a community as they brave the storm that is brewing on the horizon. We are here to ease the burdens that come

with congenital heart defects. The financial impact, the trauma, the difficult decisions. We are here to show them the sunshine that awaits them on the other side of the storm. "In a fierce prairie storm, cattle often get spooked, turn tail, and try to run from it, getting separated and lost. But buffalo herd closely together and go into the storm head on coming out of it faster stronger and united." That captures who we are, and how we're going to get through this. Come join our herd and charge the storm.

Dear Mama,As another week begins, I hope you remember something.You are carrying more than most people can see.You are c...
06/08/2026

Dear Mama,

As another week begins, I hope you remember something.

You are carrying more than most people can see.

You are carrying appointments and medication schedules. Insurance battles and phone calls. Test results and unanswered questions. You are carrying fears that wake you up in the middle of the night and worries that never seem to fully leave your mind.

You are carrying the weight of loving a child whose health is never something you can take for granted.

And somehow, despite all of that, you keep going.

You get up when you're exhausted.

You show up when you're overwhelmed.

You advocate when you're intimidated.

You smile when your heart is breaking.

You celebrate victories that others might not understand because you've learned that every milestone, every stable appointment, every good day is something worth celebrating.

I know there are moments when you wonder if you're doing enough.

If you asked the right questions.

If you missed something.

If you're strong enough for whatever comes next.

But mama, look at how far you've already come.

Look at the mountains you've climbed that you once thought would crush you.

Look at the storms you've weathered.

Look at the life you've built in the middle of circumstances you never would have chosen.

You don't have to have all the answers this week.

You don't have to carry tomorrow's worries today.

Just take the next step.

Then the next.

And when the days feel heavy, remember this:

Your child doesn't need a perfect mother.

They need you.

The one who loves fiercely.

The one who shows up.

The one who keeps fighting.

The one who never stops believing in them.

As this new week begins, I hope you find moments of peace in the chaos, strength in the uncertainty, and reminders that you are not walking this road alone.

One day.

One appointment.

One breath.

One heartbeat at a time.

You've got this, mama.

If you're starting this week carrying more than most people realize, know you're not alone. ❤️ Drop a heart below so other medical moms can find this reminder today.

06/06/2026

Five years ago today, we were together as a family.

For the first time.

And the only time.

There are dates that live quietly on the calendar, and then there are dates that change you forever.

June 6th is one of those dates for me.

Five years ago, we stood together in a moment we had waited and hoped and fought for. For a brief moment, everything felt complete. The uncertainty faded. The fear quieted. The future could wait.

We were together.

What I didn’t know then was that this memory would become so precious. That I would return to it over and over again, holding onto every smile, every touch, every detail I can still remember.

I wish I could go back and tell myself to stay a little longer in that moment.

To take one more picture.

To hold on one second more.

To memorize the sound of every laugh.

But that’s the thing about life’s most meaningful moments—we rarely know we’re living them while they’re happening.

Five years later, I carry both the joy and the heartbreak of that day.

The joy of having had it.

The heartbreak of knowing it was the last.

If today reminds me of anything, it’s this: love the people in front of you. Put down your phone. Take the picture. Say the words. Stay a little longer.

Because someday, an ordinary moment may become one of your most treasured memories.

And you won’t know it until it’s gone.

🎉 Feel the Beat – CHD Community Picnic 🎉Join us on Saturday, June 13th for a FREE day of fun, connection, and community ...
06/05/2026

🎉 Feel the Beat – CHD Community Picnic 🎉

Join us on Saturday, June 13th for a FREE day of fun, connection, and community for families impacted by congenital heart disease (CHD)!

☀️ Enjoy:
🍔 Lunch
🍧 Snow cones
🍪 Cookies
🎪 Carnival games
🎁 Prizes
💙 Amazing community vendors
💦 Splash pad fun for the kids

Whether you're a heart warrior, family member, caregiver, or medical provider, we'd love to spend the day with you. This is a wonderful opportunity to connect with other CHD families, make memories, and celebrate our incredible community.

📅 Saturday, June 13
📍Pavilion at Central Park - 8801 MLK Jr Blvd, Denver, CO 80238
🎟️ FREE to attend

Registration is requested so we can plan for food and activities.

👉 Register today: https://thelevilegacy.org/event/community-picnic2026/

Tag a CHD family and help us spread the word! 💙

HeartWorks

Trauma.It changes you.And for heart parents, I don’t think any of us walk out of those hospital doors without carrying s...
06/05/2026

Trauma.

It changes you.

And for heart parents, I don’t think any of us walk out of those hospital doors without carrying some of it with us.

The triggers.
The anxiety.
The hypervigilance.
The fear that lives quietly beneath the surface even on the good days.

It’s always there.

Sometimes trauma is loud. Sometimes it hides itself so well that you convince yourself you’re finally okay. Until something small cracks the door open and suddenly you’re right back there again.

Back in the ICU.
Back hearing monitors alarm.
Back waiting for a surgeon to walk through the doors.
Back holding your breath hoping your child survives another night.

People think the trauma ends when you leave the hospital.

But it follows us home.

It shows up when your child sleeps too long and panic rushes through your body before your mind can catch up.

It shows up every time someone says, “They look so healthy now.”

It shows up at routine appointments when your heart starts racing before the doctor even walks in.

It shows up when your phone rings late at night.
When you hear the word “surgery.”
When you smell hospital soap or sanitizer.
When you hear another family’s story and suddenly your own grief rises back to the surface.

And for loss moms… trauma doesn’t end with time.

Years can pass and your body still remembers.

Because trauma isn’t just about what happened.
It’s about what your body had to survive.

The truth is, heart parents learn how to function while carrying unimaginable fear. We learn how to smile while living in survival mode. We learn how to keep going while parts of us are still stuck inside hospital rooms we physically left years ago.

So if a heart parent seems overly anxious, protective, distant, emotional, or triggered by something that seems small to others, please be gentle with them.

Their nervous system has lived through storms most people could never imagine.

And some part of them is still trying to survive it.

💙❤Warrior Wednesday❤💙Meet Alaina! She is 1yr old with Heterotaxy, dextrocardia, DORV, ASD, pulmonary stenosis, and RV d...
06/03/2026

💙❤Warrior Wednesday❤💙

Meet Alaina! She is 1yr old with Heterotaxy, dextrocardia, DORV, ASD, pulmonary stenosis, and RV dominant single ventricle.

"Alaina spent the first seven months of her life inpatient in the hospital. During that time she underwent several surgeries, overcame NEC, and battled a serious infection post-surgery that almost took her from us. She went through long periods of sedation and being paralyzed to allow for her body to heal. Due to complications, she had to disconnect her intestines so she wasn’t able to eat and was sent home in TPN. She got a repair surgery at 10 months old, and it was very successful! She’s now able to eat, and the success has made her eligible for her next step in her heart surgeries! (The Glenn). Overall she’s doing well and has shocked everyone with how well she was able to some out of everything!

Due to Alaina’s long complicated hospital stay, Alaina has faced severe medical trauma and extreme developmental delays. She’s had to work extra hard for things that kids normally get naturally. She has such a fierce attitude and always brings the drama. She’s such a miracle and an inspiration to us and everyone who meets her!"

❤Want to see your warrior featured? Head over to our website to fill out the form! Each Warrior Wednesday receives a $25 gift card and a buffalo bead.
https://thelevilegacy.org/warrior-wednesday/

Hypoplastic Left Heart Syndrome (HLHS) is one of the most severe and complex congenital heart defects, affecting the ent...
06/03/2026

Hypoplastic Left Heart Syndrome (HLHS) is one of the most severe and complex congenital heart defects, affecting the entire left side of the heart.

In a healthy heart, the left side pumps oxygen-rich blood out to the body. But in babies born with HLHS, the structures on the left side of the heart are critically underdeveloped. The left ventricle is too small to function properly, and the mitral valve, aortic valve, and aorta may be extremely small or not formed at all.

Before birth, babies survive because of two natural openings in the heart called the PDA and PFO that allow blood to circulate differently in the womb. After birth, those openings normally begin to close.

But for babies with HLHS, the PDA is often the only pathway allowing blood to reach the body.

When it begins to close, blood flow to vital organs rapidly decreases. Without treatment, HLHS is fatal.

Most children with HLHS undergo a series of three open-heart surgeries:
🫀 Norwood
🫀 Glenn
🫀 Fontan

These surgeries are not a cure. They are palliative surgeries designed to reroute blood flow and help the heart function as effectively as possible.

And even after surgery, HLHS is lifelong.

Children and adults living with HLHS often face ongoing complications including arrhythmias, low oxygen levels, heart failure, liver and kidney complications, protein losing enteropathy, and some may eventually require a heart transplant.

HLHS is not “fixed” after surgery.
It requires lifelong specialized cardiac care, constant monitoring, and incredible strength from the patients and families living this reality every single day.

Today we honor the heart warriors born with HLHS, the families walking this journey, and the babies whose stories continue to live on in the hearts of those who love them.

If HLHS has impacted your life, we would love for you to share your story below. ❤️

"Life isn't fair."I hear it all the time.And as a heart mom, I know this better than most.I know it's not fair because I...
06/02/2026

"Life isn't fair."

I hear it all the time.

And as a heart mom, I know this better than most.

I know it's not fair because I watched my child enter this world already fighting for his life.

I watched surgeons stand for hours over an operating table, fighting to save a heart no bigger than a strawberry.

I watched providers try to adapt adult-sized medical devices for tiny infants because there simply weren't enough options designed for them.

I witnessed brilliant teams of doctors working together, using off-label medications and innovative approaches, desperately trying to give families more time with the babies they love.

I witnessed parents say hello and goodbye on the very same day.

I witnessed toddlers begging their parents to make the pain stop.

I witnessed physicians deliver the words, "There's nothing more we can do," over and over again.

So yes.

Life isn't fair.

But accepting that life isn't fair doesn't mean we stop fighting to make it better.

Because congenital heart disease affects nearly 1 in 100 babies born every year. It is the most common birth defect in the world. Yet the amount of research funding dedicated to finding better treatments, improving outcomes, and advancing care remains devastatingly disproportionate to the number of lives impacted.

CHD isn't something a child simply outgrows after surgery.

It requires lifelong specialized care.

Lifelong monitoring.

Lifelong uncertainty.

And for too many families, lifelong grief.

We have made incredible advances because people before us refused to accept "this is just the way it is."

Now it's our turn.

Our children deserve better treatment options.

Our doctors deserve better tools.

Our researchers deserve the resources needed to find answers.

And every person born with a congenital heart defect deserves the chance not just to survive but to thrive.

Life isn't fair.

But together, we can help change what the future looks like for the next generation of heart warriors.

As medical parents, we make choices that feel impossibly heavy.We step into roles we never imagined, advocates, research...
05/29/2026

As medical parents, we make choices that feel impossibly heavy.

We step into roles we never imagined, advocates, researchers, decision-makers, navigating a world of therapies, surgeries, medications, and procedures.

These decisions don’t come with guarantees.
They don’t come with easy answers.

They come with fear, with hope, with the relentless pursuit of what’s best for our child. They come with sleepless nights and a million what-ifs.

And each choice, each moment of weighing risks and outcomes, is shaping a future we cannot yet see. A future filled with possibilities, challenges, and moments that will define our child’s life in ways we may never fully grasp. We wrestle with the unknown, holding our breath as we step forward, trusting in knowledge, intuition, and love.

Sometimes, even when we've done everything we can, we still question ourselves.

But here’s the truth: We are doing the best we can with the information, resources, and love we have. We make these hard choices because we have to, because our children need us to, because we love them beyond measure.

If you’re in the thick of it today, making decisions that feel too big for you, know that you’re not alone. You are seen. You are strong. And no matter the weight of it all, you will keep going, because that’s what love does.

Twelve mothers.Twelve children whose hearts changed the world.Twelve stories that began with the words "something is wro...
05/29/2026

Twelve mothers.

Twelve children whose hearts changed the world.

Twelve stories that began with the words "something is wrong with your baby's heart."

Twelve mothers carrying a grief that most people will never fully understand.

A few weeks ago, we gathered for our Into the Storm Grief Retreat.

Not because grief can be fixed.
Not because healing means moving on.
But because no mother should have to carry this kind of loss alone.

For four days, these women spoke their children's names without hesitation. They shared photos. Told stories. Cried. Laughed. Remembered.

They honored not only how their children died, but how they lived.

One mother shared:

"For the first time in a long time, I didn't feel so alone in my grief."

Another wrote:

"This retreat gave me something I didn't realize I was craving so deeply: safety. Safety to cry. Safety to pause. Safety to speak without worrying I had overshared or traumatized someone else with my pain."

Another said:

"We arrived as strangers, but the moment we started sharing our stories, it felt like I had known them all my life. Different babies, different journeys, but the same ache stitched through all of us."

This is why we do this.

Because grief needs community.

Because bereaved mothers deserve a place where they don't have to explain themselves.

Because their children deserve to be remembered.

Because love does not end when a heartbeat does.

Most importantly, because every one of these mothers deserves to know that she is not walking this road alone.

To the twelve incredible women who trusted us with your stories, your tears, your laughter, and your precious children, thank you.

We carry their names with us.

Ellie.
Daphne.
Nora.
Xaiden.
Henry.
Alden.
Louise.
Orion.
Phineas.
Owen.
Nyla.
Eddie.

And to the donors who made this retreat possible, thank you. Because of your generosity, every mother attended at no cost. You didn't just fund a retreat. You created a space where mothers could breathe, be understood, and know their children will never be forgotten.

❤️

❤💙Warrior Wednesday💙❤Meet Elijah! he is 7mths old with ASD, VSD and cardiomegaly. "At my 20-week scan, I received news t...
05/27/2026

❤💙Warrior Wednesday💙❤

Meet Elijah! he is 7mths old with ASD, VSD and cardiomegaly.

"At my 20-week scan, I received news that would forever change my life. Shortly after my ultrasound, I got a call from a cardiologist letting me know they had found multiple heart defects. In that moment, it felt like my world shattered. I couldn’t stop asking myself, “Why?”

I immediately dove into research, spending hours learning about congenital heart defects (CHD) and what this could mean for our future.

Elijah Grey was born weighing just 5 pounds. He was diagnosed with two holes in his heart—ASD and VSD—as well as cardiomegaly, an enlarged heart. Early on, cardiologists told us that the defects were large and would require medical intervention. Elijah struggled to gain weight, couldn’t feed on his own, and had significant difficulty breathing. We went through weekly NG tube changes and multiple hospital admissions during those early months.

At 3 months old, during a routine cardiology appointment, doctors discovered fluid in his lungs. His heart wasn’t able to keep up with the blood flow needed for his body to clear it, and his lungs couldn’t function properly.

At 4 months old, Elijah underwent open-heart surgery at Mott Children’s Hospital. In a six-hour procedure, surgeons repaired both his VSD and ASD. I’ll never forget the surgeon telling us it was the largest VSD she had seen in her 30 years of practice.

Today, Elijah still has small residual holes around the repair sites due to the size of the original defects, along with a slight heart murmur. He now has a G-tube to support his feeding.

We are hopeful that by his next cardiology appointment, his residual holes will close on their own and no further surgeries will be needed. Our biggest goal is to help him continue building strength and transition to feeding orally on his own.

Through this journey, I’ve found so much comfort connecting with other CHD warrior parents through the Levi's Legacy. Seeing other children face similar challenges reminds me that Elijah is not alone in this fight—and neither am I."

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Parker, CO

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